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» LymeNet Flash » Questions and Discussion » Medical Questions » I've run out of treatment options....

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Author Topic: I've run out of treatment options....
tickled1
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So I'm 2 1/2 yrs. into treating this and for the last year I've had a lot of starts/stops due to stomach issues. Most recently, I started Cipro 3 wks. ago b/c I'm still testing positive for Mycoplasma after first testing positive 2 1/2 yrs. ago. Also on the Cipro for suspected Bart and confirmed Klebsiella.

Well, I ended up in the doctors office again today for stomach pain. I was optimistic with a new doc I've been seeing lately but was told they will not Rx IV abx for me for fear of medical board coming down on them. Well now it's seeming I can no longer do orals b/c of my stomach and I can't afford IV's anyway, or a doc that would Rx them for that matter so where does that leave me?

I also can't afford to go to Germany for Bionic 880 and don't have a lot of faith in herbals. Herbs also bother my stomach for that matter. Hope I don't have pancreatitis. Guess I'm up the creek w/out a paddle. I honestly can't think of anyway out of this without ending up dirt poor and even if I put myself into further financial burden, it wouldn't be guaranteed to cure me so I can't take my family down with me for something that isn't guaranteed to put me in remission.

Honestly don't know anyway out of this.

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sixgoofykids
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On your report for the klebsiella it should tell herbs that will also kill it. I took Humaworm for it and citrobacter after taking Cipro, then oregano oil/plant tannins/uva ursi.

Sounds like you need to work on your gut. I'm reading The Body Ecology Diet and it has a lot of great ideas for healing the leaky gut and rebuilding good flora.

I liked the Buhner core herbs - cat's claw/samento, banderol, andrographis, and resveratrol.

--------------------
sixgoofykids.blogspot.com

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Lymetoo
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Consider Rifing...

There is a great link here on that.. you can find it by doing a search.

also try here:

www.lymebook.com/resources

--------------------
--Lymetutu--
Opinions, not medical advice!

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abigail
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I am in the same boat as you, but I do IM cefotaxime (better than Rocephin) and IM something like penicillin. What about that?

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sutherngrl
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Two choices to consider....injections as stated above; or just take a 2 or 3 month break and treat your stomach issues, then start treatment again.
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tick battler
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Sorry to hear about your stomach...the same thing happened to my 6 year old and I had to stop abx. We are working on his stomach and he is able to tolerate herbs while we do this...Samento, Cumanda, Cryptolepsis and grapefruit seed exxtract are some he has taken. His symptoms are actually getting better for the first time in a year. The herbs are working better than the abx.

I have stopped abx with my other two children as well and they too are getting better and did not relapse as I feared would happen.

I would go the alternative route...find someone good who does electrodermal screening or muscle testing so you can target the right microbe with the right herb or with rife.

I would seriously consider rife. Many attribute their remission to rife. This is probably the least expensive option, since it is a one time cost. Also - you can probably try one from a member of this board in your area. That's what I did.

You do have options...abx are not the only route. It just takes time to research it all but there are other ways to beat it. I felt the same way as you a couple of months ago when my son could no longer take abx.

tickbattler

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sickpuppy
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If I were in your shoes, I too would try rife and then maybe herbs after.

I see those things in my future but I'm lucky I only get nauseous from time to time. The focus of the problems is not my gut, yet!

Don't give up. There's always something to do. I have the $ problem myself--so I hear ya on the fears of gobbling up everyone's cash.( Mepron at $1500--yay!) [Roll Eyes]

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tickled1
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Thanks for all your replies. Rife sounds kind of scary to me. Doesn't it send an electric frequency through your body? I've also never heard of anyone going into remission with that but I guess I was wrong. Will look into that. Anyone know if Rife is dangerous for someone with POTS, heart issues, dysautonomia, a lot of neuro involvement? I also don't know if I can handle saunas as I don't do well in heat and don't think I sweat properly for that matter.

Enzymes and GSE hurt my stomach as does just a sip of alcohol (haven't even done that in I can't remember how long). I am really scared that this is pancreatitis. I really hope not. I could barely eat today and skipped most meds due to the pain and burning. It's in the upper middle abdomen. Anyone know what this is? My kidneys also seem to hurt and my bladder seems irritated.

Is the muscle testing with a biotensor or something like that? I watched a brief video of someone using one of those and I didn't see any proof behind it. Seemed kind of in the category of Reiki to me which I just don't understand how that could work either. Maybe I'm just not spiritual enough but I can't spend money on something that has no proven scientific evidence to back it up.

I did IM Bicillin last year for about 6 mos. and think it helped but I don't know if Lyme is my biggest issue right now and bicillin doesn't hit Myco, Klebsiella and Bart. I had good results with Factive last year which is another reason for the Cipro b/c in same drug family but stomach can't tolerate it.

I have taken a 2-3 month break and my stomach issues didn't resolve w/probiotics and prilosec. Don't know what else to do for my stomach.

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psano2
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Have you tried any natural products? You might consider GSE (by Nutribiotics), organic coconut oil, fresh ginger root made into a tea or used fresh as a flavoring for dishes (like chinese food), turmeric, and most recently I've had strong herxes with Limoncello liquer. I've had strong herxes after using each of these.

I know some here are very much against the idea of any kind of alcohol intake, so the idea of alcohol concerns you, you could try making a VERY dilute solution of essential lemon oil and try drinking a little of it, like a teaspoon or less to start with, just to see how you respond to it. If you are up to trying limoncello, I would dilute a little with water and ice and also start with just a little (1/4 teaspoonful?) and see how you respond.

I'm taking more than that, but I'm further along in treatment. The initial herx was quite strong, but each day it gets easier. I've found the same thing for the other natural products I've used.

Some people seem to have done well w/salt/c, but it's not something I've ever tried. You have to be careful to use the right type of salt, and follow the protocol carefully, from what I've read.

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psano2
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Here's some info on lemon oil.

LEMON OIL

Organically grown lemons are stripped of their skins and the rinds are cold-pressed to extract lemon oil. A kilo of lemon oil is extracted from about three thousand lemon rinds. Some principal chemical compounds found in the lemon rind are the compound limonene, as well as gamma-terpinene, the compound called beta-pinene, the compound called alpha-pinene and the sabinene compound.

The meningococcus bacteria is killed off within fifteen minutes by the vaporized lemon essence, the typhoid bacilli takes just an hour to be eliminated in this treatment, in two hours the Staphylococcus aureus strain can be defeated using the essence, while the Pneumococcus bacterial strain will die off within three hours of use. As little as a 0.2 percent solution made of the lemon oil will result in the elimination of the diphtheria bacterial strain in twenty minutes. This same dilute solution also acts to permanently inactivate the tuberculosis bacterial strain.

The strong anti-septic like properties of the lemon oil is one well researched effect. Lemon also contains classes of compounds that are being investigated for their immune function in the laboratory.

Various types of digestive problems, soreness in the throat, persistent anxiety, blood pressure problems, digestive and different types of respiratory infections may also be beneficially treated using the remedies made from the lemon. The lemon based remedy aids the formation and development of leukocytes in the blood, it helps improve and boost the memory, it actively strengthens nails, and also induces a sense of well being in the person, while having a cleansing effect on the skin. At the same time, anti-depressant effects induced by the lemon oil have also been observed in human trials under clinical test conditions.

The therapeutic grade essential oil of lemon has a great potency, and there are no known virus or bacterial agent which can live in the presence of this oil for any length of time - not a single strain or viral particle capable of resisting this oil has been found to date. Viruses often mutate and develop immunity to any class of antibiotics; however, no virus has been able to breach the potency of the essential oils present in the lemon. Hospitals in Europe and England made extensive use of the lemon oil and it is still diffused these days as well. One very unique blend of the essential oils was placed under clinical trials at Weber State University, in order to gauge the potency of the antimicrobial actions; the results astounded the researchers as the kill rate of the oil was 99.96 percent against common airborne bacterial pathogens.

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nefferdun
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I don't have any other advice but I hope you can find something to help you. Sometimes we have to take a break from the abx for one reason or another.

Cipro and that family of drugs is very hard to tolerate. Levaquin had me floxed so badly I couldn't use abx for 8 months. During that time I got by with herbs but slowly relapsed with the bart. Herbs just aren't strong enough.

Now I am using Bactrim DS and roxithromycin or zithro. I still have my problems with every abx - been up since 2:30AM. . . . hopefully another half hour and I can get a little more sleep. They all give me insomnia.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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Pocono Lyme
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Have you been checked for H.Pylori?

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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timaca
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laura~ Have you been checked for enteroviruses at ARUP lab? Enteroviruses can also cause stomach problems. See: www.enterovirusfoundation.org.

Best, Timaca

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tickled1
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psano2, the smallest bit of alcohol causes me terrible stomach pain as does GSE. [Embarrassed] (

Pocono Lyme, been checked for H. Pylori many times...negative.

timaca, I haven't been checked for that virus but I'm curious, if I did have a bunch of viruses, what would be done about it anyway? My Lyme doc doesn't rx antivirals and I don't think many docs do. I know I have EBV for sure.

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wealdsteve
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i have purchased some essential lemon oil today and would like to give it a try. Can anyone tell me how many drops i might mix with a glass of water and when is the best time to take it?
thanks

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tick battler
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laura j - here is a post I did awhile ago...http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/89559?#000000

you might try to find a practitioner who does the electrodermal screening. The key is to find someone really good. I have someone in PA but it sounds like catskillmamala had someone perhaps closer to you. Might be worth a try.

tickbattler

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aMomWithHope
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Laura, if you find someone in MA, could you PM me? I haven't had any luck finding one for my daughter.
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timaca
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laura j~ Some viruses can be treated...HHV-6, EBV, and enteroviruses...it's worth checking into those. For info see: www.hhv-6foundation.org and www.enterovirusfoundation.org

Why do you say you have EBV? What are your test results?

For the record I've gotten better by treating viruses.

Best, Timaca

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psano2
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wealdsteve,

I would start with one drop, dilute it in 8-12 oz water. Shake it well to disperse the oil, and then drink just a tiny bit, like a teaspoonful to see how you respond. Essential oils are very strong, so you don't want to take too much. Other wise you might have too strong a herx.

I wonder if there's something you can use to dissolve the oil so that it's not all just sitting on top of the water? Maybe someone else can suggest something.

For what it's worth, the limoncello is working really well for me. I don't take it straight. I dilute it in a large glass of water with crushed ice and sip it. If you dilute one oz of limoncello (in which the lemon essential oils are already diluted, we just don't know how diluted it is) in a 12 oz glass of water/ice, you really get very little sugar. You barely taste the sugar. It's less sweet than the lemonade I drink.

Initially I herxed really strongly. The first day I had a difficult time waking up, then was groggy for most of the rest of the day. Each day that got a little better. Then on the 3rd or 4th day, my left inguinal area, and JUST the left inguinal area got really tender and painful to touch. This lasted 2 days, then went away. My joints also started aching all over, but that's much better. I also had one big welt form on my right side of the chest wall, which lasted one day, then disappeared.

What I'm saying is to be prepared to herx strongly, so be cautious with the dose until you see how your body responds to it.

Today I felt really good. I went to the farmer's market, bought flowers, took them to the cemetary for my parents and brother and came back and baked cookies for a get together tomorrow.

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psano2
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Another thought, Steve, maybe you should dilute the lemon oil in some olive oil or grapeseed oil and then it wouldn't have any problems dispersing. Then you could take a teaspoonful of the oil mixture and just take it orally and see how that works for you.
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Marrit
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"So I'm 2 1/2 yrs. into treating this and for the last year I've had a lot of starts/stops due to stomach issues ... "

lauraj, I also have a very sensitive stomach.
I have found MASTIC GUM to be the best healer of them all. It is derived from a shrub in Greece and has been used for thousands of years. It can heal ulcers. It's worked well for me.

Find a good reputable brand without a lot of additives. Take it for a week. You should notice a difference the first day, but a week or two is good for severe cases.

I am cautious about taking herbs, but Mastic Gum is benign and used liberally in cooking and confections in Greece.

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Jin
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Dear Marrit,
I took Mastic Gum for a while. It certainly cannot hurt! Which brand did you use? I bought mine from Life Enhancement. H. Pylori causes ulcers, so it is no surprise that Mastic destroys it. So does one ounce of broccoli sprouts, which are rich in sulforaphane. It too is proven to be an excellent weapon against H. Pylori.

Sincerely,
Jin

--------------------
Celiac Disease (2007)
Candida Overgrowth (2006)
Thyroid Disease (2004)
Gallbladder Disease (removed- 2003)
Fibromyalgia (2001)
Ovarian Cysts (5 in less than 10 months - 2000)
Anemia (2000)
IBS (1999)
Acid Reflux (1999)

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tickled1
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A lot of good info and advice....thanks everyone! Will definitely look into the Mastic gum.

Does anyone know if Miralax is ok to take on a regular basis? I think constipation is part of my problem as well. It seems I can't have a bowel movement w/out my morning cup of coffee and sometimes that doesn't even work. I also want to stop drinking coffee. My daughter has been on Miralax for months for constipation and her pediatrician says that is fine. I don't know if that is the case for us though with all our issues?

Jin, does the Mastic gum kill H. Pylori or the brocolli sprouts or both? I keep testing negative for H. Pylori but don't know if the tests are accurate.

timaca, I will definitely check out those links. What is used? Antivirals? So are you in remission?

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timaca
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laura j~ Yes, I've used various antivirals. I am better than I was (much better) but not yet well. I am still battling various pathogens. My story is found on the HHV-6 patient's forum.

Best, Timaca

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wealdsteve
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thanks Psano2

i have mixed a drop in some water and will give it a try. will keep you posted. thanks again

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17hens
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tamica,

you said, "Some viruses can be treated...HHV-6, EBV, and enteroviruses...it's worth checking into those. For info see: www.hhv-6foundation.org and www.enterovirusfoundation.org"

being very new to this information and feeling like it's way over my head at this point, i'm wondering if you could explain how to treat EBV for example.

I did look up the wesites you posted but couldn't find the answer.

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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tickled1
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timaca,

Where can I find your story in that forum? I couldn't find it. Thanks

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timaca
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Valcyte was used to treat my EBV. My story can be found in the patient's forum on the HHV-6 website. You will need to sign in to read the posts.

Here is my valcyte journey:
http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=39

Here is my oxymatrine journey:
http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=200

Best, Timaca

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zil
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Slippery elm and marshmellow is good for sensitive stomach also you could try get some empty capsules they come in various sizes so you'd want to get them big enough and put your antibiotic in one or two capsules so it will go thru the stomach. I get the marshmellow and slippery elm at vitacost.com
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sandyk
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My husband has had pancreatitis 4x during treatment now, no one knows what is causing it. But the pain you are describing does sound like what he goes through.

If that pain does not subside, it would hurt to go to the ER and get your lipaise/amalaise levels checked. You DO NOT want a full blown pancreatitis attack.

You would know, the pain would be so bad that you would have no doubt but to go to the ER.

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rks
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I've had a lot of stomach issues for years now. My LLMD had me do L-Glutamine and always told me to eat something with my antibiotics because of my sensitive stomach.

I also drink Kefir and take two different probiotics. Lemon and ginger tea is also good for my upset stomach, cramping, and naseau.

On Veria, which is a healthy, holistic living type cable channel,it said that L-Glutamine helps repair the silia in your stomach.

It's taken about two months, but I'm starting to see a noticeable improvement.

I was on the Pure Encapsulation brand in the powder form. I would take one scoop in the morning and one scoop in the evening.

I believe it says you can take up to four or six scoops a day, but can't remember now. I just took mine with a little bit of water.

It last quite a long time as the scoops are not huge and it's not too expensive.

Hope you are feeling better soon.

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METALLlC BLUE
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Laura, you might try searching for my post called "Almost Nothing Has Worked"

I got a massive array of help and advice. It's a lot more than what is posted here thus far. The advice here is good, it's just my post has like 4-5 pages I believe.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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